Madison Area Lyme Support Group

We, Luke Mears and Madison Pinckney, founded the Duke Law Lyme Disease Advocacy Project (LDAP) in 2022.

In creating the group, we hope to improve the lives of Lyme disease patients by partnering with nonprofit organizations that work on legislative advocacy and lawsuits centered on Lyme.

Madison’s Lyme story

I contracted Lyme at about nine years old, but I wasn’t diagnosed for another 10 years. I grew up in and out of doctors’ offices, searching for answers that always seemed to be “that’s normal.”

While I was deteriorating during a severe flare in 2018, my mom’s research led to finding a Lyme specialist. While filling out the symptom questionnaire in the doctor’s office, I kept pointing to a symptom and asking my mom, “that doesn’t happen to you?”

After being properly diagnosed with multiple tick-borne infections, I found rapid relief of many symptoms, but other persisted.

Throughout the past five years of flares and treatment, I’ve seen the frustration and inequities of being a Lyme patient. I focused my advocacy work on being a mentor, starting a podcast, and lobbying for increased federal funding. In 2021, I saw drastic symptom improvement and took advantage by starting law school at Duke University, hoping to make a difference for Lyme patients and those with disabilities.

Luke’s Lyme story

I was diagnosed with Lyme disease in 2020, only a few weeks after being sent home from my undergraduate institution due to the Covid-19 pandemic.  I remember being more tired than I ever had been and fighting a constant swing of anxiety attacks and mood swings. The pandemic did not make finding a medical provider easy, but after three weeks I got a doctor’s appointment.

Unfortunately, that appointment only led to a misdiagnosis, and it took multiple additional weeks to find a new doctor who was, after much testing, finally able to reach a diagnosis of Lyme disease. After weeks of antibiotic treatment, I began to feel better and improve. The ordeal remains one of the most stressful and painful experiences of my life, and the indifference and ignorance faced throughout made me want to make a difference in the Lyme disease space.

I briefly considered a public health degree instead of law, but I decided to follow my life dream of being a lawyer. Founding the Lyme Disease Advocacy Project here at Duke has allowed me to help others facing this disease, while also working toward larger societal improvements in awareness, prevention, and treatment of the disease.

The project’s formation and work

While sitting on her bed prepping for the Center for Lyme Action’s Virtual Fly-In the next day, Madison saw an email from Luke Mears to the Duke Law Class of 2024. He wanted to start a Lyme Disease Advocacy Project pro bono group at the law school at Duke. After an immediate reply, followed by discussion of their shared experiences, LDAP began to take shape.

Not only was it cathartic to find someone in such a small community who had experienced similar pain, it was even better to find someone who shared our passion for making in difference in this disease. As two individuals healed enough to attend law school, we felt a responsibility to give back to those still waiting for a diagnosis or helpful treatment.

LDAP began a trial period in the spring of 2022 and received great support. During a hectic time, the month before finals, we received interest from numerous volunteers and were able to connect with other classmates affected by Lyme as well.

Becoming official

More than ten students completed over 60 hours of pro bono work, researching and writing about legislative questions and issues regarding Lyme disease. The first research projects completed by our nonprofit partners spurred the project’s growth and LDAP became an official Duke Law pro bono project in the summer of 2022.

This year, we’ve expanded the project and our partners, aiming to provide legal and advocacy assistance across the country.

Some of our work has focused on the relationships between health agencies, policies on including Lyme disease information on government websites, and Lyme vaccine development.

At the halfway mark of the semester, over a dozen students have completed over 70 hours of pro bono work relating to Lyme disease. With these students continuing to work on various projects, we estimate that our ambitious goal of doing 150 hours of pro bono work relating to Lyme disease should be realized by the end of the semester.

Through this project, we are utilizing the incredible resources we have access to and sharing the skills we’ve learned while at Duke. As LDAP continues, we’re proud of everything our volunteers can do to further the fight for change. We’re grateful to Duke University’s School of Law and all our partners for giving us the opportunity to work for the benefit of the Lyme community.

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**Food For Thought**

This is the first I’ve heard of this work, so I don’t pretend to understand everything they are attempting to do other than what is stated in this brief article.  That said, it is my experience that many with a sincere desire to help the Lyme/MSIDS community are uneducated about the sordid backstory of government deception – including fraud, corruption, and underhanded manipulation at every turn, conflicts of interest, and the ongoing yet fruitless attempts to work with these same corrupt government agencies.

This backstory is foundational to know in order to move forward wisely.  Not knowing and understanding this backstory means more time, effort, and money will be wasted, and a lot has already been wasted.